PD01-08 USE OF SUPPLEMENTS IN THE INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME COMMUNITY: PATIENT-REPORTED UTILIZATION PATTERNS AND PERCEPTIONS

Abstract

You have accessJournal of UrologyInfections/Inflammation/Cystic Disease of the Genitourinary Tract: Interstitial Cystitis (PD01)1 Sep 2021PD01-08 USE OF SUPPLEMENTS IN THE INTERSTITIAL CYSTITIS/BLADDER PAIN SYNDROME COMMUNITY: PATIENT-REPORTED UTILIZATION PATTERNS AND PERCEPTIONS Paige Kuhlmann, Andrew Chen, Kai Dallas, Peris Castaneda, Victoria Scott, Jennifer Anger, and Karyn Eilber Paige KuhlmannPaige Kuhlmann More articles by this author , Andrew ChenAndrew Chen More articles by this author , Kai DallasKai Dallas More articles by this author , Peris CastanedaPeris Castaneda More articles by this author , Victoria ScottVictoria Scott More articles by this author , Jennifer AngerJennifer Anger More articles by this author , and Karyn EilberKaryn Eilber More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000001965.08AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Interstitial cystitis/bladder pain syndrome (IC/BPS) management is multimodal, and often includes alternative therapies. Natural supplements are one such therapy that has yet to be studied adequately. We sought to better understand the IC/BPS community’s perception of supplement usage for symptom control. METHODS: A 40 question online survey was designed to elicit responses from people with the diagnosis IC/BPS, capturing demographics and perspectives on disease management strategies, including supplements. Multiple choice and free text answers were included. The survey was posted to the Interstitial Cystitis Association’s Facebook page to access applicable respondents. Survey responses were anonymous. RESULTS: 461 respondents completed the survey, 432 female and 29 male. >85% of respondents indicated they were “somewhat,” “very”, or “highly” likely to take a supplement for IC/BPS symptom relief or prevention, with 75% saying they would have no apprehension at all. Of the remaining 25%, over half cited side effects as their reason for apprehension. Other reasons included questionable efficacy, lack of regulation/evidence, price, medication interactions, and concern for triggering symptoms/allergies. Supplement recommendations from doctors were considered more trustworthy than peer or online reviews. 183 respondents (40%) were already taking supplements, 144 (31%) for chronic symptom management, and 158 (34%) for flare symptom control. The most commonly used supplements were aloe vera, Prelief, and d-mannose (Figure 1a&b). Supplement use did not vary with age. Supplements were the fourth most common management strategy after diet, medications, and reduction of sexual activity. Almost 60% of respondents taking supplements reported some degree of efficacy. 120 patients (26%) had taken supplement(s) in the past, but then stopped, most often due to lack of efficacy (72%) or side effects (19%). CONCLUSIONS: 40% of respondents with IC/BPS take supplements for symptom management. A much larger proportion of these patients are open to supplements, but perceive lack of efficacy and side effects as obstacles. Research on efficacy of supplements for IC/BPS is needed to help counsel patients about management options and provide them with more effective therapy. Source of Funding: LifeSeasons © 2021 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 206Issue Supplement 3September 2021Page: e33-e34 Advertisement Copyright & Permissions© 2021 by American Urological Association Education and Research, Inc.MetricsAuthor Information Paige Kuhlmann More articles by this author Andrew Chen More articles by this author Kai Dallas More articles by this author Peris Castaneda More articles by this author Victoria Scott More articles by this author Jennifer Anger More articles by this author Karyn Eilber More articles by this author Expand All Advertisement Loading ...